A fun day for me, is a day filled with learning new things.
When my brain is occupied, my body is much calmer than when I am bored.
To have a calm body is absolute bliss.
I am astonished to see how my body is acting since I am attending UCT OHS (University of Cape Town Online High School) . I have never been this happy before. I can see that my body looks almost normal when I am busy with my schoolwork. I have never before had so much control over my stupid body as I have when I study intricate work. I have to work very hard to keep up with the schedule I have to stick to. I struggle to keep up, but so does the other kids. I am so proud of my Science marks. I got 49/50 which is the best thing since I was most scared of failing this subject. I am very concerned that I still have to get permission from SACAI.
I have to add that I am very grateful for the support we get from the UCT OHS-team. I have given my Support Coach and Wellbeing Team member extra work because of my disabilities, but they are great in supporting me.
I have met my Afrikaans teacher . She is also very friendly and tried to help me with the questions I had.
I have to be optimistic, or I’ll get depressed. Being optimistic is easy now that I am doing work that is difficult enough that I understand why revision is necessary. Before I started Grade 10, I was extremely bored with my schoolwork. Now I have to apply my mind and I love every minute of it. I have to say, I am now not going to get such good marks any more, but that is okay. I have proofed that I am clever. So, now I can just enjoy the learning process and that is great to say.
I am so happy to be in a school, but I know I’ll have to proof to my teachers that I deserve to be there. This is something normal children do not have to do. They are considered good enough to attend school until they proof otherwise. For people like me, that is not the case. I hope I have what it takes to make it to the end of matric. No matter what happens, I have proven myself to me and no one will be able to rob me of that experience and for that I shall be for ever grateful.
*This blog was written by Nicolaas in Afrikaans and translated by mom to English. Scroll down for English version, please. Nicolaas is non-speaking and uses S2C (Spelling to Communicate) to communicate, i.e. spelling his words by tapping letters on a letterboard.
Me wearing my “ears” to tone down auditory input.
Om nie te kan praat nie,
beteken nie dat ek nie hoor wat ander praat nie.
Dit beteken ook nie dat ek nie dink oor goed waarvan ander rondom my praat nie.
Dit beteken beslis ook nie dat ek nie ontsteld raak oor dinge wat ek hoor nie.
Ons moet onthou dat my gehoor beter is as meeste ander mense s’n. Al dra ek my “ore”, hoor ek steeds beter as meeste mense. Al fluister mense, ek hoor dit steeds.
Alles wat ek hoor, is goed wat ek oor dink.
Omdat ek nie so baie praat nie, dink ek oor baie goed na. Om oor goed na te dink, hou my brein besig. Om my brein besig te hou is belangrik vir my omdat dit my help om my lyf te kan beheer omdat as my brein besig is, is my lyf kalmer as gevolg waarvan ek dan my lyf beter kan beheer. Dit is dan tot my eie bes wil om my brein soveel moontlik in te span as wat ek kan.
‘n Besige brein = ‘n kalmer lyf vir my. So, om te dink oor goed is my stokperdjie, want dit help my om te ontspan.
Ongelukkig kan my dinkery weer lei tot ‘n uit beheer lyf. As my kop te besig raak met dink oor goed soos die politiek, of ander goed wat my ontstel, is dit nie goed vir my nie. Ek het al so baie goed oor gedink dat ons ‘n dik boek sal kan skryf as ek dit alles moet vertel.
My gedagtes bly meestal net my eie.
Oor ons so baie kans kry vir dink, is dit onmoontlik om oor alles te kommunikeer, want my dink is baie vinniger as my spel op die borde of skrywery. Nou is dit so dat as ek die slag kans kry om te gesels dat dit vir my die heerlikste ding is om my gedagtes met my gesin te deel. As jy nooit ‘n kans kry om jou gedagtes uit te spreek nie, dan kan jy ook nie ‘n kans kry om te hoor of wat jy gedink het reg of verkeerd is nie.
Ek verstaan soms goed nie soos ander mense nie omdat my lewe so anders is as meeste mense s’n.
Ek raak ook so gewoond daaraan om nie my gedagtes uit te spreek nie, dat ek vergeet dat my gedagtes dalk ook ‘n goeie ding is of selfs ook vir iemand anders kan help. Dit is hoekom dit vir my so baie spesiaal was toe my pappa vir my gesê het dat die opmerking wat ek oor sy stoet ramme gemaak het, hom nou help.
Om my gedagtes te kan deel is ’n groot ding.
Om my gedagtes iets te laat beteken vir ander mense, is ook ‘n groot ding.
In die skool wat ek laas jaar was, was daar kinders wat kan praat, maar nooit iets gesê het nie. Vir hulle wil ek net sê: jou gedagtes is belangrik. As jy dit nie deel met ander nie, is dit jou keuse, ‘n keuse wat my nie beskore is nie omdat ek net kan kommunikeer wanneer my mamma of pappa my help. Omdat jy kan praat, het jy ’n keuse. Jy besef dalk nie hoe baie dit beteken om so ‘n keuse te hê nie, maar dit is baie handig. Vir julle wil ek sê: moenie dat jou keuse om stil te bly jou in die voet skiet nie.
Om jou gedagtes te kan deel is jou kans om jou gedagtes te toets. Oor jy dit kan toets, kan jy nog beter goed uit dink.
As ons nou so aan dit alles dink, is my boodskap net: jou gedagtes tel ook, moenie bang wees om dit uit te spreek nie.
My ideas are also important.
Not being able to talk,
doesn’t mean I don’t hear what others are talking about.
It also doesn’t mean I don’t think about stuff others around me are talking about.
It certainly doesn’t mean I don’t get upset about things I hear either.
We need to remember that my hearing is better than most other people’s. Even though I wear my “ears,” I still hear better than most people. Even though people whisper, I still hear it.
Everything I hear is stuff I think about.
Because I don’t talk that much, I think about a lot of stuff. Thinking about stuff keeps my brain busy. Keeping my brain busy is important to me because it helps me to be able to control my body because when my brain is busy, my body is calmer because of which I can then control my body better. It is therefor, in my own best interest, to exert my brain as much as I can.
A busy brain = a calmer body for me. So, thinking about stuff is my hobby because it helps me relax.
Unfortunately, my thinking can lead to an out of control body again. If my head gets too busy thinking about stuff like politics, or other stuff that upsets me, that’s not good for me. I’ve thought about so much stuff that we’ll be able to write a thick book if I have to tell it all.
For the most part, my thoughts remain just my own.
Because we get so much time for thinking, it’s impossible to communicate about everything, because my thinking is much faster than my spelling on the boards or writing. When I get the chance to chat, sharing my thoughts with my family is the most delightful thing for me. If you never get a chance to express your thoughts, then you also can’t get a chance to hear whether what you thought was right or wrong.
I sometimes don’t understand things like other people because my life is so different from most people’s.
I also get so used to not expressing my thoughts, that I forget that my thoughts might also be a good thing or even help someone else as well. This is why it was so very special to me when my dad told me that the comment, I made about his stud of rams, is now helping him.
To be able to share my thoughts is a big thing.
To be able to help others with my thoughts , is also a big thing.
In the school I was last year, there were kids who could talk but never said anything. To them, I just want to say: your thoughts are important. If you don’t share it with others, it’s your choice, a choice that I do not have because I can only communicate when my mom or dad helps me. Because you can talk, you have a choice. You may not realize how much it means to have such a choice, but it is very useful. To you, I want to say: don’t let your choice to shut up shoot you in the foot.
Being able to share your thoughts is your chance to test your thoughts . Because you can test it, you can think out even better stuff.
Now, when we think about all of this, my message is just – your thoughts count too, don’t be afraid to express it.
This post was written by Nicolaas in Afrikaans and translated by Mum. Please scroll down for the English version.
My wense vir die nuwe jaar.
2022 was woes!
Dit was woes lekker, maar ook woes hard en woes swaar.
Alles was uiteindelik woes goed.
Nou is ons by 2023.
2022 was ‘n jaar van baie leer. Ons het geleer wat ons nie geweet het nie, ons het geleer wat niemand geweet het nie, ons het ook geleer wat niemand gedink het moontlik is vir my om te leer nie. Ons is nou baie slimmer as wat ons aan die begin van 2022 was. Ons kan nou die kennis wat ons opgedoen het, gebruik om vir ander te help, maar ook om my toekoms te beplan. Ons het nou ‘n beter idee hoe om my skoolloopbaan se laaste 2 jaar aan te pak sodat ek ‘n sukses daarvan kan maak. Ons is nou baie beter toegerus om by matriek uit te kan kom.
My mamma is nie net my CRP (Communication and Regulation partner) nie, sy is ook my mamma, ook my sussie se mamma en my pappa se vrou. Sy wil nog ‘n tydjie hê om haar eie goed ook te doen. Dit is ‘n gesukkel om tyd te kry om alles gedoen te kry terwyl sy my CRP is. So, ons moet mekaar in ag neem want anders raak ons vies vir mekaar. My hele dag sal ek graag aan my skool werk wil spandeer, maar my mamma kan nie vir my heeldag help nie. Sy wil ander goed ook doen. Ons is daarom besig om uit te sorteer hoe ons altwee van ons se lewens kan lei met net een lyf wat wat behoorlik kan werk tussen die twee van ons. Dit is iets waaraan ons hierdie jaar sal moet werk, want die tyd is maar ‘n probleem.
My sussie is hierdie jaar in matriek. Sy wil ook tyd hê om te besluit oor haar toekoms. Ons moet vir haar ook haar beste kans gee om haar toekoms te beplan. My mamma sal vir haar moet ook moet help. Tyd is regtig ‘n probleem .
Ek beplan daarom om hierdie jaar dit bietjie stadiger te vat met my skoolwerk sodat ons tyd kan kry om by ander goed as skoolwerk ook uit te kom. Ons het allerhande planne wat ons wil doen. Met al ons planne, sal ons die belangrikste in gedagte moet hou dat my Sussie ook aandag nodig het. Sy is nou in ‘n tyd wat sy ons hulp nodig het om ook haar toekoms te beplan.
Ek is baie lief vir my sussie. Sy het so baie potensiaal om ‘n verskil in die wêreld te maak dat dit vir my hartseer sal wees as sy nie haar beste kans kry om dit te bereik nie.
Om my sussie te wees is nie maklik nie. Sy moet baie dae tevrede wees met net dit wat oor is as my ouers my klaar versorg het. Sy vat dit soos dit kom. Sy is nie moeilik of stout oor sy nie altyd die aandag kry wat sy verdien nie. So, hierdie jaar is dit haar tyd om voorop gestel te word, want sy verdien dit.
Om my heldin te wees, is nie maklik nie. Sy is my heldin. Sy is so mooi met my. Nou dat sy heeltemal verstaan hoe my lyf werk, is sy my grootste hulp om my lyf te help om met my hondjie te leer speel. Sy help my so mooi dat ek dit nou al reg kry. Om my sussie te wees is haar beste kans om te leer wat om te maak as dinge moeilik raak. Sy moes ook leer om rustig te bly al lyk dinge nie so rustig om haar nie. Dit kry sy al hoe beter reg. Dit sal haar in die lewe voorentoe ook baie help.
Vir 2023 is dit my wens dat my sussie sal besef hoe baie ons vir haar lief is sodat, waar ookal sy gaan, ons liefde vir haar haar sterk gaan maak.
My wishes for this year.
2022 was hectic!
It was hectic exciting, but also hectic hard and hectic challenging.
Everything turned out hectic good.
Now it is 2023.
2022 has been a year of much learning.
We learned what we didn’t know,
we learned what no one knew,
we also learned what no one thought was possible for me to learn.
We are much smarter now than we were at the beginning of 2022. We can now use the knowledge we have gained to help others, but also to plan my future. We now have a better idea of how to tackle my school career’s last 2 years so that I can make a success of it. We are now much better equipped to get too matric.
My mom is not only my CRP (Communication and Regulation partner), she is also my mommy also my sister’s mommy and my dad’s wife. She still wants some time to do her own stuff too. It’s a struggle to find time to get everything done while she’s my CRP. So, we have to take each other into account because otherwise we get upset at each other.
My whole day I would love to spend on my school work, but my mum can’t help me all day. She wants to do other stuff too. We are therefore sorting out how we can live both of our lives with only one body that can work properly between the two of us. This is something we will have to work on this year, because time is really an issue.
My sister will be in matric (Grade 12) this year. She also needs time to decide on her future. We need to give her her best chance to plan her future. My mum will have to help her too.
Time is really an issue. I therefore plan to take it a little slower with my schoolwork this year so we can find time to get to things other than schoolwork as well.
We have all kinds of plans that we want to do. With all our plans we will have to bear in mind, most importantly, that my sister is also in need of attention because she is now in a time when she needs our help to plan her future.
I love my sister very much. She has so much potential to make a difference in the world. It would be sad for me if she didn’t get the best chance to achieve it.
Being my sister is not easy. Many days she has to settle for with just what’s left when my parents have finished taking care of me. She takes it as it comes. She’s not difficult or naughty about not always getting the attention she deserves. So, this year, it’s her time to be put front and center, because she deserves it.
Being my heroine is not easy. She’s my heroine. She handles me so well. Now that she completely understands how my body works, she is my biggest help in helping my body learn to play with my dog. She helps me so beautifully that I’m getting it right by now.
Being my sister is her best chance to learn what to do when things get tough. She also had to learn to stay calm even though things didn’t seem so serene around her. She gets better and better at this. This will also help her a lot in life up front.
For 2023, it is my wish that my sister will realize how much we love her so that, wherever she goes, our love for her will make her strong.
This blog was written in Afrikaans by Nicolaas and translated to English by Mum to reach more readers. Please scroll down for the English version.
My gedagtes oor 2022. Deel 2
My jaar was woes!
Dit was woes lekker, maar ook woes hard en woes swaar.
Alles was uiteindelik woes goed.
My oorwinning saam met Elizabeth Vosseller (“EV”) by my ou skool.
Van links na regs: Me. Elizabeth Vosseller (I-ASC), Me.Cecile de Villiers (Langerugskool, Worcester), Zekwande Mathenjwa (Zekwande Foundation), ek
EV is die persoon wat my lewe verander het deur vir my mamma te leer van S2C (Spelling to Communicate). Dit is haar werk wat my lewe, en my vriende wat soos ek is, se lewens verander.
Haar metode het vir my hoop gebring toe ek al lankal hoop opgegee het op kommunikasie.
Haar manier van doen het my lewe verander van ‘n kind sonder n toekoms na ‘n kind met n mooi lewe wat hoop het op ‘n toekoms.
Ek wil so graag hê dat die kinders wat saam met my in die skool was, wat ook “non speaking” is, ook hierdie lewe wat ek nou het, moet hê.
Dit is vir my baie swaar om te dink aan my vriende wat saam met my non speaking is wat nog steeds nie kan kommunikeer nie. My hart ken hulle seer, hulle hoop wat nie meer hoop nie, hulle moed wat laag is, en hulle seerkry as mense dink hulle verstaan nie wat ander mense sê oor en voor hulle nie.
My droom was nog altyd om my naaste eerste te help voor ek my tyd aan mense wat ek nie ken nie spandeer. Nou het ons die beste gedoen wat ons kan doen deur vir EV te kry om self te kom vertel oor hoe haar metode werk by die skool waar ek was voor ek met my regte skool loopbaan begin het.
Haar besoek aan my ou skool was die grootste droom wat vir my hierdie jaar bewaarheid is. Dit is selfs groter as my droom om self skool te kan gaan, dat my vriende ook kan leer kommunikeer. Ek hoop en bid dat haar moeite om na Worcester te kom vrugte afwerp sodat ons ook ander non-speakers hoop kan gee.
Ek was baie bekommerd toe ons die praatjie by my ou skool gaan by woon het. My grootste vrees was dat ek nie my lyf sou kon beheer nie . Ek wou so graag vir my ou juffrouens wys hoe mooi ek gevorder het sodat hulle kan sien wat se verskil kommunikasie maak in my lewe en in my vriende se lewens kan maak.
As ek op my senuwees raak, is die kanse baie skraal dat ek my lyf gaan kan beheer. Ek moes baie hard werk aan myself om in sulke omstandighede in beheer te bly van my lyf.
Hierdie was ‘n baie belangrike dag in my lewe, want dit was my grootste oorwinning oor my lyf.
Om so lank te kon stil sit, in die saal waar ek nooit toegelaat was om ‘n saal byeenkoms by te woon terwyl ek in die skool was nie, is die uiterste uitdaging gewees vir my. Om te sê dat ek dit met vleënde vaandels geslaag het, is sagkens gestel.
Ek het my lyf so mooi onder beheer gehou dat ek myself totaal verstom het aan wat moontlik is. Dat ek dit nooit sou kon doen voor ek kon kommunikeer nie, is maar wors. Ek sou nie tien minute kon hou nie, maar omdat my hele lewe verander het as gevolg van my kommunikasie, het dit my in staat gestel om dit te kon doen.
Voorheen, toe ek in hierdie skool was, moes ek baie sterk pille gedrink het, want my lyf was net te uit beheer oor alles wat in my kop aangegaan het en wat nie kon uitkom nie. Kommunikasie het die pille nie meer nodig gemaak nie. Nou is kommunikasie my enigste pil vir al my uitdagings.
My ou juffrouens het my gesien. Hulle het gesien hoe my lewe verander het. Ek het gesien hoe hulle vir my kyk. Hulle kan nie stry dat my lewe handomkeer verander het nie.
Dit is nie uit my eie goedgeid wat dit gebeur het nie. Dit was baie harde werk om te kom tot waar my lewe nou is. Dit was nie maklik nie, maar dit was altyd die moeite werd, al het dit soms swaar gegaan.
Ek is baie dankbaar vir EV, en my vriend Zekwande van die Zekwande Foundation, dat hulle soveel moeite gedoen het om vir my te help om die S2C boodskap na my vriende wat in my omgewing is , te bring. Julle het my ‘n kans gegee wat ek nooit sal vergeet nie. Baie dankie dat julle soveel moeite doen om S2C moontlik te maak vir alle “non speakers”.
Behalwe daarvoor dat ek soveel sukses met my lyf gehad het, het ek ook nog die voorreg gehad om my eie woorde te hoor in die skoolsaal. My mamma het my woorde voorgelees. Om vir mense met my eie woorde te vertel hoe om non-speaking te wees en hoeveel dankbaarheid ek het vir EV, was vir my baie spesiaal.
Na EV se praatjie het ons nog ‘n kans gekry om met ander mense te praat wat ook daar was. Om ander ouers moed te gee, is die spesiaalste ding wat ons al gedoen het. Dit was ‘n voorreg om met hulle te kon praat.
Hier is my woorde weer:
Nicolaas se toespraak by Langerugskool, Worcester.
14 September 2022
“Dit is goed dat ons oor die metode praat. Daar is die siekundige aspek ook wat ons moet onthou. Kinders wat nie kan praat nie, kry swaar. Selfs al lyk hulle okay, hulle kry elke dag swaar. Dit is nie lekker om nie te kan praat nie. Dit maak hulle depressief en hartseer en angstig en gefrustreerd. Ons vergeet nie van hulle nie.
Ek is oneindig dankbaar vir EV dat sy Worcester toe kom. Ek hoop dat haar liefde vir ons nie-praters, ons vriende wat nog nie hul stemme gekry het nie, sal bereik. Elkeen wat die boodskap vandag hoor, julle is bevoorreg om dit uit haar mond te hoor. Sy is ‘n vrou wat regtig haar hart in haar werk sit, maar haar kop gebruik om planne te maak om ons te help. Sy is nederig oor haarself, maar haar werk verander regtig lewens. As dit van my afgehang het, het sy al lankal ‘n Nobelprys gehad. So, kom ons luister wat sy sê. Vir haar sal dit meer werd wees as die Nobel-prys, as sy volgende keer Worcester toe kom en al die non-speakers kan spel.
Zekwande, my vriend, jy is my hero. Baie dankie dat jy vir ons vriende wat nog nie kan kommunikeer nie, so hard werk. Jy het my stem vir president.
Ons was so gelukkig om vir twee dae deel te wees van die werk wat in die Kaap gedoen was. Die liefde en aanvaarding wat ek daar ervaar het, was ongelooflik. Daar was “actually” mense wat opgewonde was om met my te werk. Hierdie liefde en aanvaarding is iets wat ek vir alle non-speakers gun – ‘n wêreld waarin ons nie net verduur word nie, maar gerespekteer word vir ons harte en woorde wat so diep onder ons moeilike lywe begrawe word.
Baie dankie vir elkeen van julle wat gekom het vandag. Ons kan nie blyer wees oor enige geskenk, as wat ons is oor julle vandag hier is. Ons het gebid vir mense wat ‘n verskil kan maak, om hier te wees en dit is julle wat gestuur is om die boodskap te hoor.
Ons non-speakers het hulp nodig. Ons kan nie self oor daai brug kom na Vryheid nie. Ons het hulp nodig. So, as elkeen van julle net die boodskap kan uitdra dat ons verstaan, al lyk dit asof ons nie doen nie, sal dit al klaar help.
Ons hoop dat die non-speaker gemeenskap hierdie kant van die berg nog baie gaan groei. Ek sal graag help waar ek kan, so vra my gerus.
Baie dankie dat ek my sê ook kan sê. Nou is dit EV se beurt.”
My thoughts on 2022. Part 2
My year was hectic!
It was hectic exciting, but also hectic hard and hectic challenging.
Everything turned out hectic good.
My victory with Elizabeth Vosseller (“EV”) at my old school.
From left to right: Ms Elizabeth Vosseller (I-ASC), Ms Cecile de Villiers (Langerugschool, Worcester), Zekwande Mathenjwa (Zekwande Foundation), me
EV is the person who changed my life by teaching my mum about S2C (Spelling to Communicate). It is her work that changed my life, and the lives of my friends who are like me.
Her method brought me hope when I had long since given up hope on communication.
Her way of doing things changed my life from a child without a future to a child with a beautiful life who has hope for a future.
I so badly want the children who were in school with me, who are also “non speaking”, to also have this life that I have now. It’s very hard for me to think of my friends who are also non-speaking and still can’t communicate. My heart knows their hurts, their hopes that no longer hope, their courage that is low, and their hurt when people think they don’t understand what other people are saying about them and in front of them.
My dream has always been to help my neighbours first before I spend my time with people I don’t know. Now we’ve done the best we can do by getting EV to come and tell herself about how her method works at the school I was at before I started my current school career.
Her visit to my old school was the biggest dream come true for me this year. It is even bigger than my dream to be able to go to school, that my friends can also learn to communicate. I hope and pray that her effort in coming to Worcester pays off so that we can give other non-speakers hope as well.
I was very worried when we went to attend the talk at my old school. My biggest fear was that I wouldn’t be able to control my body. I wanted so badly to show my old teachers how beautifully I have progressed so that they can see what a difference communication makes in my life and in my friends’ lives. When I get on my nerves, the chances are very slim that I’m going to be able to control my body. I had to work very myself to stay in control of my body in such circumstances.
This was a very important day in my life because it was my biggest victory over my body. To be able to sit still for so long, in the hall where I was never allowed to attend a assembly or other meeting while in school, is the ultimate challenge for me. To say that I passed this test with flying colours, is to put it mildly.
I kept my body so nicely under control that I found myself totally amazed at what was possible. I would never have been able to do this before I could communicate. I wouldn’t be able to last ten minutes, but because my whole life changed as a result of my communication, it allowed me to do it.
Previously, when I was in this school, I had to take very strong pills, because my body was just too out of control over everything that was going on in my head and that could not get out. Communication no longer made the pills necessary. Now communication is my only pill for all my challenges.
My old teachers saw me. They saw how my life changed. I saw how they looked at me. They can’t argue that my life has changed completely. It’s not because I am so good, that it happened. It was a lot of hard work to get to where my life is now. It wasn’t easy, but it was always worth it, even if it was difficult at times.
I am very grateful to EV, and my friend Zekwande of the Zekwande Foundation, for putting so much effort into helping me bring the S2C message to my friends who are in my area. You gave me a chance I’ll never forget. Thank you so much for putting so much effort into making S2C possible for all “non speakers”.
Apart from having so much success with my body, I also had the privilege of hearing my own words in the school hall. My mum read my words. Telling people with my own words how to be non-speaking and how much gratitude I have for EV was very special to me.
After EV’s talk, we got a chance to talk to other people who were also there. Giving other parents courage is the most special thing we’ve ever done. It was a privilege to be able to talk to them.
Here are my words again.
Nicolaas’s speech at Langerugschool, Worcester.
14 September 2022
“ It is good that we are talking about the method.
There is an emotional aspect that we need to remember. Children who cannot speak are suffering. Even if they look okay, they struggle every day.
It’s not nice not to be able to talk. It makes them depressed and sad and anxious and frustrated. We don’t forget about them.
I am infinitely grateful to EV for coming to Worcester. I hope that her love for us non-speakers, will reach our friends who have not yet received their voices. Everyone who hears the message today, you are privileged to hear it out of her mouth. She is a woman who really puts her heart into her work but uses her head to make plans to help us. She is humble about herself, but her work really changes lives. If I had a say in it, she would have been rewarded a Nobel Prize a long time ago. So, let’s listen to what she says. For her, it will be worth more than the Nobel Prize, if she comes to Worcester next time and all the non-speakers can spell.
Zekwande, my friend, you are my hero. Thank you so much for working so hard for our friends who can’t communicate yet. You have my vote for president.
We were so lucky to be part of the work that was done in the Cape for two days. The love and acceptance I experienced there was incredible. There were actually people who were excited to work with me. This love and acceptance is something I wish for all non-speakers – a world in which we are not only endured, but respected for our hearts and words buried so deeply beneath our troubled bodies.
Thank you so much to each and every one of you who came today. We couldn’t be happier about any gift than we are about you being here today. We prayed for people who could make a difference, to be here, and it is you who have been sent to hear the message.
Our non-speakers need help. We can’t get across that bridge to Freedom ourselves. We need help. So, if each of you can just convey the message that we understand, even if we don’t look like we do, it will already help.
We hope that the non-speaker community will grow a lot more this side of the mountain. I’d be happy to help where I can, so feel free to ask me. Thank you so much for being able to say my say as well. Now it’s EV’s turn.'”
This post was written in Afrikaans by Nicolaas and translated by Mum, with the help of Google translate, to reach more readers. Please scroll down for the English version.
My gedagtes oor 2022. Deel 1
My jaar was woes!
Dit was woes lekker, maar ook woes hard en woes swaar.
Alles was uiteindelik woes goed.
Ek maak dit in ‘n gewone skool.
My mooiste droom om na ’n skool toe te gaan, het waar geword. Al was dit “online”, dit was saam met gewone kinders, gewone skool werk en met gewone onderwysers.
Ek kan vir niemand beskryf hoe groot dit is vir my om dit te kan sê nie. Ek sukkel soms nog om te glo dat dit nie nog steeds net ‘n droom is nie.
Dit is nie net vir myself wat ons so hard werk nie, dit is ook vir my vriende wat soos ek is (outisties en nie-pratend). Ek het goeie moed dat my jaar vir ander soos ek, gaan help. My ervaring is ‘n beginpunt vir my, en vir ander soos ek, om op te bou sodat ons in Suid Afrika uiteindelik vir almal ‘n kans kan gee om ook te leer. Teen volgende jaar hierdie tyd hoop ek dat ons nog ‘n stem of meer gaan by kry wat kan vertel van hulle ervaring sodat ons almal saam kan werk om vir ons ‘n beter toekoms te skep.
Ons gaan altyd ‘n opdraende stryd hê om met gewone kinders se pas by te hou, maar ons kan op alle maniere ons breine inspan om planne te maak om by al die werk uit te kom sonder om uit te mis of af te skeep.
Dit was ‘n baie harde jaar vir my en my mamma. Ons moes vreeslik hard werk om alles gedoen te kry. Dit was soos om ‘n marathon te hardloop, die hele tyd. Ons moes bitter baie ure insit om gedoen te kry wat ons gedoen het. Ek kan wel met ‘n rein hart sê dat AL die werk wat ek in gegee het, my EIE werk was. Al moes my mamma of my “scribes” dit vir my neerskryf of tik, ALLES WAT EK INGEGEE HET WAS MY EIE WERK.
Dit is iets waarop ek ongelooflik trots op is. My mamma het my mooi gehelp om inligting te Google as ek dit vir haar vra. Sy het gehelp om grafieke te teken soos wat ek haar beduie het om te doen. Sy het my gehelp om my Biologie eksperiment op te stel sodat my oë die resultate kon sien om dit neer te skryf. Oor sy my so mooi gehelp het met die goed wat my lyf nie kan doen nie, het my brein sy beste kans gekry om te wys waartoe hy in staat is.
My mamma is my grootste hulp in my poging om te kan skool loop. Sy help my onsettend baie, soveel so dat sy haarself afskeep om my te kan help. As iemand dink sy help my deur die take vír my te doen, of die antwoorde vir my te gee in die eksamen, maak hulle ‘n reuse fout. My mamma help my met my lyf, sodat my brein lekker kan werk, sodat my brein kan dink en die antwoorde gee wat sy dan weer moet neerskryf.
Sy doen dit met soveel respek vir my dat sy nooit oorvat of die goed self doen nie. Sy gee my dit wat ek nodig het om self die werk gedoen te kry. Dit is die beste ding wat iemand vir my kan doen. Dit gee my kans om my ware potensiaal te bereik.
As iemand iets vir my doen, in plaas daarvan om my te help om dit self te doen, maak hulle my baie hartseer. Al bedoel hulle dit so goed, dit is nog steeds nie vir my lekker nie. My lyf leer niks as iemand iets vir my doen nie. My lyf sal altyd ‘n struikel blok vir my wees. Dit sal maar altyd vir my ‘n stryd wees om goed gedoen te kry op my eie stoom, maar om dinge vir my te doen, help my nie.
Ons is ook besig om vir ander mense te vertel hoe om kinders wat soos ek is, te help, om ook hulle potensiaal te bereik in die skool. Dit is daarom vir my belangrik om hierdie punt mooi te beklemtoon: Ons is nie hulpeloos nie, maar ons het baie hulp nodig om ons lywe uit te sorteer sodat ons mooi kan wys wat ons kan doen. Ons het baie potensiaal, maar ons lywe is nie ons beste hulp middel om te wys wat ons kan doen nie. Ons het mense met lywe wat reg werk nodig om ons te help. As ons net die hulp kry wat ons so nodig het, kan ons breine ons in staat stel om ‘n positiewe bydrae in die wêreld te maak.
Ons deurbraak by die eksamenraad:
My mamma ken my lyf beter as enige iemand anders omdat ons so mooi saam werk. Omdat my lyf ‘n struikel blok is, het ek iemand nodig wat my lyf so goed ken anders kan hulle my nie behoorlik help om my volle potensiaal te bereik nie.
My lyf het baie streke wat my nie sal keer om met ‘n ander goeie CRP te werk nie, maar om my in die skool en eksamen te help, het ek iemand nodig wat my lyf baie goed ken. As dit nie so kan werk nie, gaan my lyf my in die steek laat Dit is ‘n moeilike ding om vir mense te verduidelik wat nie verstaan nie, maar dit is wat dit is.
Ek is baie bly dat die eksamen raad ons ‘n kans sal gee om al die hulp wat ek nodig het, te kan hê in die eksamens al is dit iets waarmee hulle sekerlik nog nie te vore te doen mee gehad het nie. Ons is so bly dat hulle ons ‘n kans gaan gee. Ons sal ons bes doen om hulle nie terleur te stel nie.
Ek het Graad 10 geslaag!
“Nicolaas has been promoted to Grade 11. Congratulations”
UCT online high school, 2022 Term 4 Report
Dit was ‘n stryd, maar ek kan sê dat UCT ohs ons net soveel gehelp het as wat hulle dit vir ons moeilik gemaak het. Ons kon uiteindelik die wa deur die drif kry, maar ons wa was maar gehawend teen die einde. Ek is steeds baie dankbaar vir die kans wat hulle my gegee het. Die ondersteuning en respek wat ek van my “support coaches” en sommige onderwysers gekry het, sal my altyd by bly. Dit was die eerste keer in my lewe wat skoolpersoneel my so goed behandel het. Hulle het my raak gesien vir my verstand en verby my lyf se streke gekyk.
My hoop is dat ons dit vir my vriende, wat soos ek is, ook moontlik sal kan maak as hulle sien dat ek dit reg kry.
My thoughts on 2022. Part 1
My year was hectic!
It was hectic exciting, but also hectic hard and hectic challenging.
Everything turned out hectic good.
I made it in a regular school.
My most beautiful dream of going to a school came true. Even though it was “online”, it was with ordinary children, regular school work and with ordinary teachers.
I can’t describe to anyone how big it is for me to be able to say that. I sometimes still have a hard time believing that it’s not still just a dream.
It’s not just for myself that we work so hard, it’s also for my friends who are like me (autistic and non-speaking). I have high hopes that my year is going to help others like me. My experience is a starting point for me, and for others like me, to build upon so that we in South Africa can finally give everyone a chance to learn as well. By next year, I hope we’ll get another voice, or even more, who can also tell about their experience. We can all work together to create a better future for us.
We’re always going to have an uphill battle to keep up with regular kids’ pace, but we can use our brains in many ways to make plans to get to all the tasks without missing out or neglecting anything.
It’s been a really hard year for me and my mum. We had to work terribly hard to get everything done. It was like running a marathon, all the time. We had to put in a lot of hours to get to where we got too. I can say with a pure heart that ALL the work I put in was my OWN work. Even if my mum or my scribes had to write it down or type it for me, EVERYTHING I HANDED IN, WAS MY OWN WORK. It’s something I’m incredibly proud of.
My mum helped me by Google-ing information when I asked her to do it. She helped by drawing graphs like I instructed her to do. She helped me by setting up my Biology experiment so that my eyes could see the results and to write it down. By helping me so beautifully with the stuff my body can’t do, my brain got its best chance to show what it’s capable of.
My mum is my biggest help in my endeavor to go to school. She helps me a lot, so much so that she neglects herself to be able to help me. If someone thinks she is helping me by doing the tasks for me, or giving me the answers in the exams, they are making a huge mistake. My mum helps me with my body, so my brain can work, allowing my brain to think and give the answers that she then has to write down again. She does it with such respect for me that she never takes over or does the stuff herself. She gives me what I need to get the job done myself. It’s the best thing anyone can do for me. It gives me a chance to reach my true potential.
When someone does something for me, instead of helping me do it myself, they make me very sad. Even though they mean it so well, I do not like it. My body learns nothing when someone does something for me. My body will always be a stumbling block for me. It will always be a struggle for me to get things done on my own steam, but doing things for me doesn’t help me.
We are also in the process of telling other people how to help children, who are like me, to reach their potential in school as well. It is therefore important for me to emphasize this point : We are not helpless, but we need a lot of help to sort out our bodies so that we can show what we can do. We have a lot of potential, but our bodies are not our best means of showing what we can do. We need people with bodies working correctly to help us. If we only get the help we so desperately need, our brains can enable us to make a positive contribution in the world.
Our breakthrough at the exam board:
My mum knows my body better than anyone else because we work so well together. Because my body is a stumbling block, I need someone who knows my body so well otherwise they can’t properly help me reach my full potential. My body has many challenges that won’t stop me from working with another good CRP. But to help me in school and exams, I need someone who knows my body very well. If it can’t work that way, my body is going to let me down. It’s a difficult thing to explain to people who don’t understand, but it is what it is.
I am very happy that the exam board will give us a chance to be able to have all the help I need in the exams, even though it is something they have certainly not dealt with before. We’re so happy that they’re going to give us a chance. We will do our best not to disappoint them.
I passed Grade 10!
“Nicolaas has been promoted to Grade 11. Congratulations”
UCT online high school, 2022 Term 4 Report
It was a struggle, but I can say that UCT ohs helped us just as much as they made it difficult for us. We were finally able to get the wagon through the drift, but our wagon was battered towards the end. I’m still very grateful for the chance they gave me. I shall always remember the support and respect I have received from my support coaches and some of the teachers. It was the first time in my life that school staff treated me so well. They respected me for my mind and looked past my body’s challenges.
My hope is that we will be able to show my friends, who are like me, that it is possible for them too when they see that it was possible for me to manage.
Acceptance, my key to freedom. CONTINUED (PART 4 of 4)
My acceptance of myself would not have been possible without:
6. People, I cross paths with, who accept me for my brain and my personality. My body no longer stops me from connecting with other people.
There are two groups of people in my life. One group is the ones who know me from before I could communicate and then there is the group that have been getting to know me now, ever since my words can come out. These are 2 different groups of people who have played an important role in my path to accepting myself, for different reasons, with my flaws and all.
The first group is also divided into 2 subsections:
The people who got to know me and wrote me off. We should not judge these people, because they had good reason to do so. Before my words could come out, I was angry and frustrated because I was struggling so much, my body was uncontrollable and they really couldn’t have helped to not like me. I understand this.
The second group, under this section, are people who got to know me without words and saw me at my very worst, and yet kept believing in me, loved me despite what I did. These are just a handful of people, but each of them is like treasures that are incredibly precious to me. Your love means more to me than you will ever understand. Your love gave me hope in my darkest hours and made me keep trying even though my chances of ever escaping from my prison of fear and anxiety sometimes seemed very bad.
Your love for me is worth more to me than all the therapies I’ve ever done.
We need it so much to not feel rejected while we are struggling with our difficult bodies. Your love helped me not to give up, when giving up seemed to me to be my only way out. Thanks, is all I can say. Your love has saved me.
The second group is the people who get to know me with my words and all. You are also very important.
You make me forget the dark ghosts of the past. You make me hope for a beautiful future with friends and people who respect me for my brain and my heart. To have hope of being able to show people that under this messy body I have a smart brain and a good heart, is something I haven’t had for a very long time.
That doesn’t mean I expect everyone to love me. Not everyone likes my humor or things I love. It’s not necessary for everyone to love me. The very fact that I can show the world who I am, with my words, is enough for me. Being able to converse with strangers is something that is difficult for many people. For me, it was impossible to talk to anyone, for my whole life, until a few years back. If I get the chance to talk to strangers now, I’m like a kid getting a gift. I can see people struggling to make sense when they hear my mommy’s voice, but it’s me talking, my words. At first we struggle to make the person accept that these are my words even though they hear my mother’s voice, but when they have made the connection, people enjoy talking with me.
Being able to talk to other people, is an incredible privilege for me and something I never thought would ever be possible. This is the most enjoyable for me. When people accept me in such a way that they later strike up a conversation with me on their own, or include me in their conversation, this is the ultimate pleasure for me. Then I know the person really sees me for who I am and has respect for my heart and brain.
People think at first, it’s a funny thing to talk to me, but when they get to know me, they later find out that I’m also just a human being who also likes to talk about ordinary things. That’s when my heart knows that person sees my whole being. My whole life, not just my funniness. There aren’t many people who have arrived here yet, but those who is have, is worth more than 100 others who are still on their way.
Thank you to each of you. You make me feel like a complete human being with a place in the world.
7. Time to heal from old wounds
Getting to where I am now is a process.
It’s been a long process. There were a lot of ups and downs and there will certainly still be plenty. There were many tears and even wounds and blood. There was joy and little glimmers of hope. There was despair and hopelessness.
There was enough good to keep us going and enough bad that sometimes we had to stop and take a breath before we could move on. There were days when nothing worked, days that went well and days when things just got all messed up. There were days when my heart was broken into thousands of pieces, and days that I broke the hearts of others.
Getting to where I am today, was a lot of hard work, harder than most people would have been able to do. My mother stood by me, even though it wasn’t easy for her. Without her, I would never have been able to do it.
Time has been merciful to us. We can now look back and say that we took the time we got and healed. We worked, and sowed, and now we can harvest.
We can count our blessings because we see the light.
We are calm, the best place to be.
I have peace in my heart, about my past and my future.
Aanvaarding, my sleutel tot Vryheid. VERVOLG (DEEL 4 van 4)
My aanvaarding van myself sou nie moontlik gewees het sonder:
6. Mense wat oor my pad kom wat my aanvaar vir my brein en my persoonlikheid. My lyf keer my nie meer om met ander mense kontak te he nie.
Daar is 2 groepe mense in my lewe. Die een groep is die wat my ken van voor ek kon kommunikeer en dan is daar die groepe wat my nou, vandat my woorde kan uitkom, leer ken. Dit is 2 verskillende groepe mense wat om verskillende redes ‘n belangrike rol gespeel het in my pad na aanvaarding van myself met my gebreke en al.
Die eerste groep is ook opdeelbaar in 2 onderafdelings:
Die mense wat my leer ken het en my afgeskryf het. Ons moet nie die mense oordeel nie, want hulle het goeie rede gehad om dit te doen. Voor my woorde kon uitkom was ek kwaad en gefrustreerd omdat ek so gesukkel het, my lyf was onbeheerbaar en hulle kon regtig nie gehelp het om nie van my te hou nie. Ek verstaan dit.
Die tweede groep onder hierdie afdeling is mense wat my leer ken het sonder woorde en my op my heel slegste gesien het, en tog in my bly glo het, vir my lief gewees het ten spyte van wat ek aangevang het. Hierdie is net ‘n handjie vol mense, maar elkeen van hulle is soos skatte wat vir my ongelooflik kosbaar is. Julle liefde beteken vir my meer as wat julle ooit sal verstaan. Julle liefde het my hoop gegee in my donkerste ure en my laat aanhou probeer al het my kanse om ooit te ontsnap uit my tronk van vrees en angs op stadiums maar baie sleg gelyk. Julle liefde vir my is vir my meer werd as al die terapieë wat ek al gedoen het. Ons het dit so nodig om nie verwerp te voel terwyl ons so sukkel met ons moeilike lywe nie. Julle liefde het my gehelp om nie moed op te gee nie, toe moed op gee vir my na my enigste uitweg gelyk het. Dankie is al wat ek kan sê. Julle liefde het my gered.
Die tweede groep is die mense wat my leer ken met my woorde en al. Julle is ook baie belangrik. Julle laat my die verlede se donker spoke vergeet. Julle laat my hoop op ‘n mooi toekoms met vriende en mense wat my respekteer vir my brein en my hart. Om die hoop te hê om mense te kan wys dat ek onder hierdie deurmekaar lyf ‘n slim brein en ‘n mooi hart het, is iets wat ek baie lank nie gehad het nie. Dit beteken nie dat ek nou verwag dat almal van my gaan hou nie.
Nie almal hou van my humor of van goed waarvan ek hou nie. Dit is nie nodig dat almal van my hou nie. Die blote feit dat ek vir die wereld kan wys wie ek is, met my woorde, is vir my genoeg.
Om met vreemde mense te kan gesels is iets wat vir baie mense moeilik is. Vir my was dit onmoontlik om met enige iemand te kan gesels, vir my hele lewe, tot ‘n paar jaar terug. As ek nou die kans kry om met vreemde mense ook te gesels, is ek soos ‘n kind wat ‘n geskenk kry. Ek kan sien hoe mense eers sukkel om die kloutjie by die oor te kry wanneer hulle my mamma se stem hoor, maar dit is ek wat praat, my woorde. Ons sukkel eers om die persoon te laat aanvaar dat dit wel my woorde is al hoor hulle my mamma se stem, maar wanneer hulle die konneksie gemaak het, gesels mense gou gou land en sand met my. Om met ander mense te kan gesels, is dus vir my ‘n ongelooflike voorreg en iets wat ek nooit gedink het ooit moontlik sal wees nie. Dit is vir my die lekkerste lekker.
Wanneer mense my so aanvaar dat hulle later uit hul eie met my ‘n gesprek aanknoop , of my insluit by hulle gesprek, is dit vir my die top punt van plesier. Dan weet ek die persoon sien my regtig vir wie ek is en het respek vir my hart en brein. Mense dink eers dit is ‘n snaaksigheid om met my te gesels, maar wanneer hulle my leer ken, kom hulle later agter dat ek ook net ‘n mens is wat ook hou daarvan om oor gewone dinge te gesels. Dit is dan wanneer my hart weet daardie persoon sien my hele menswees. My hele menswees, nie net my snaaksigheid nie. Daar is nog nie baie mense wat hier gekom het nie, maar die wat wel daar is, tel meer as 100 ander wat nog oppad is. Dankie vir elkeen van julle. Julle laat my soos ‘n volledige mens voel met ‘n plek in die wêreld.
7. Tyd om te genees van ou wonde
Om te kom tot waar ek nou is, is ‘n proses. Dit was ‘n lang proses. Daar was baie op’s en af’fe en daar sal verseker nog baie wees. Daar was baie trane en selfs wonde en bloed. Daar was vreugde en klein sprankies hoop. Daar was mismoed en wanhoop. Daar was genoeg goed om ons te laat aanhou en genoeg sleg dat ons soms moes halt roep en eers moes asem skep voor ons kon verder. Daar was dae wat niks gewerk het nie, dae wat als mooi geloop het en dae wat dinge net deurmekaar geloop het. Daar was dae wat my hart in duisende stukkies gebreek is, en dae wat ek ander se harte gebreek het. Om te kom tot waar ek vandag is, was baie harde werk, harder as waarvoor meeste mense sou kans sien. My mamma het my bygestaan, al was dit vir haar ook nie maklik nie. Sonder haar sou ek dit nooit gemaak het nie.
Tyd was ons genadig, want ons kan nou terugkyk en sê dat ons die tyd gevat het wat ons gekry het en gesond geraak het. Ons het gewerk en gesaai en nou kan ons oes. Ons kan ons seëninge tel, want ons sien die lig. Ons is rustig en dit is die beste plek om te wees. Ek het vrede in my hart oor my verlede en my toekoms.
My acceptance of myself would not have been possible without:
3. Knowledge about why my body works the way it works
I UNDERSTAND WHY MY BODY DOES WHAT IT DOES AND WHY IT DOESN’T DO WHAT I WANT IT TO DO.
Understanding this, enables me to accept my inabilities, make peace with my disability, and learn to live with it. Before I knew why my body is so difficult to control, it made me very depressed and anxious. Now that I understand why my body doesn’t work like other people’s, I’m much calmer about it and when I’m calm, I can actually get more done with my body.
4. My own ability to make my body function better by using my knowledge and making plans:
Because I now know how my body works, I was able to process the information in my brain and get to know my body.
I learned, among other things, what things impact my body’s functioning. I tested it out myself to see what makes a difference on my body. I now know e.g. how important sleep is to me, and what and when I eat. Knowing all the things that affect my body is my best way to get more control of my body. And more control over my body means a better life for me.
I can prepare better now if I know there is a difficult manageable situation on the way. I can also say when it’s better for me, before I’ve even tried, not to take on a hard-to-handle situation. I learn when it is better to try for myself and when it is better to ask for or accept help. We, e.g. plan escape routes for me out of difficult manageable situations so that I can have a chance to retire with dignity when my body fails me.
It’s so important for me, at this point, to be allowed to cut my own path open through the numerous obstacles that lie all over my path, so that I can learn for myself what works for me and what doesn’t. I make an effort to make the knowledge, about how and why my body works the way it works, my own, do my own tests, and make my own plans. I’m always going to have to live with my disability. It is therefore very important that I learn how to manage my disability in the best possible way so that I can do the best I can.
5. My mother’s respect for me for allowing me to decide for myself how I want to do things even though it means that sometimes I’m going to make mistakes about not wanting to follow her advice.
Being allowed to have a say on your own life, is something that doesn’t automatically happen in the life of someone who is like me. It is accepted that I will not be able to be independent anyway and therefore it is also accepted that I have to settle according to other people’s ideas and expectations.
It’s not fair to me or other people like me. I also have dreams and plans and ideals and expectations about my future. It saddens me a lot when I talk about this. Because it’s something that’s so hard to write about, I haven’t touched it before. Now is the time for me to talk about it.
Being disabled doesn’t mean we don’t also think about our future, like other people. We also think about the future, and we have to live with what we hear and see other people say about our future. Like other people, we are also concerned about what will become of us.
My brain is not affected, I can think and understand. I know what the odds are that I can expect an independent future. This is zero. Yet, like other people, I also want to dream about my future and do everything in my power to pursue my dreams as well.
I want to be allowed to pursue my dreams.
Even though it may sound ridiculous to other people, I also have dreams and ideals and also deserve an opportunity to make it come true. It’s not right that others just give me one look and decide I can’t do something. We have to fight against our own disability and then the disabled box in which the world wants to push us. It’s a double fight.
I am very fortunate because my parents give me the opportunity to pursue my dream of going to school. Even though it’s not something other people understand, it’s my dream and my parents give me a chance to pursue it, despite others’ questions and disbelief. They help me realize my dream, they give me space to make my own decisions, they help me pursue my dreams. It makes a huge difference in my life.
Being able to make my own decisions, and allow me to say what I want, is the greatest form of honor and respect I have ever received in my life.
No one has any idea how much this means to me. My mom doesn’t speak for me anymore, she gives her voice to me so I can speak for myself. It’s the most beautiful thing anyone can do for me. It gives me the courage to stand up for others like me who are not so fortunate.
Aanvaarding, my sleutel tot Vryheid. VERVOLG (DEEL 3 van 4 )
My aanvaarding van myself sou nie moontlik gewees het sonder:
3. Kennis oor hoekom my lyf werk soos hy werk
EK VERSTAAN NOU HOEKOM MY LYF MAAK SOOS HY MAAK EN HOEKOM HY NIE WIL MAAK SOOS EK WIL Hê HY MOET MAAK NIE. Dit maak dat ek my eie onvermoens kan aanvaar, vrede maak met my gestremdheid en leer om daarmee saam te leef. Toe ek nie geweet het hoekom my lyf so aweregs is nie, het dit my baie depressief en angstig gemaak. Noudat ek verstaan hoekom my lyf nie werk soos ander mense s’n nie, is ek baie rustiger daaroor en as ek kalm is, kan ek sowaar meer uitgerig kry met my lyf.
4. My eie vermoë om my lyf beter te laat werk deur my kennis te gebruik en planne te beraam:
Omdat ek nou weet hoe my lyf werk, kon ek die inligting in my brein verwerk en my lyf leer ken.
Ek het onder andere geleer wat ‘n invloed kan hê op my lyf se werking. Ek het dit self uitgetoets om te sien wat ‘n verskil op my lyf maak. Ek weet nou bv hoe belangrik slaap, en wat en wanneer ek eet, vir my is. Kennis van al die goed wat my lyf beïnvloed, is my beste manier om meer beheer oor my lyf te kry. En meer beheer oor my lyf beteken ‘n beter lewe vir my.
Ek kan bv nou beter voorberei as ek weet daar is ‘n moeilik hanteerbare situasie oppad. Ek kan ook sê wanneer dit vir my beter is, voor ek nog eers probeer het, om nie ‘n moeilik hanteerbare situasie aan te durf nie.
Ek leer wanneer dit beter is om self te probeer en wanneer dit beter is om hulp te vra of te aanvaar. Ons werk bv. ontsnappingsroetes vir my uit uit moeilik hanteerbare situasies sodat ek kans kan kry om met waardigheid uit die stryd te tree wanneer my lyf my in die steek laat.
Dit is so belangrik vir my op hierdie stadium om toe gelaat te word om my eie pad oop te kap deur die talle hindernisse wat oral in my pad lê sodat ek self kan leer wat vir my werk en wat nie. Ek doen moeite om die kennis, oor hoe en hoekom my lyf werk soos hy werk, my eie te maak, my eie toetse te doen, en my eie planne te maak. Ek gaan vir altyd met my gestremdheid moet saam lewe. Dit is daarom baie belangrik dat ek leer hoe om my gestremdheid op die beste moontlike manier te bestuur sodat ek die beste kan doen wat ek kan doen.
5. My mamma se respek vir my om my toe te laat om self te besluit hoe ek dinge wil doen al beteken dit dat ek soms foute gaan maak oor ek nie haar raad wou volg nie.
Om ‘n sê oor jou eie lewe te hê, is iets wat nie outomaties gebeur in iemand wat soos ek is, se lewe nie. Dit word aanvaar dat ek in elk geval nie onafhanklik sal kan wees nie en daarom word dit ook aanvaar dat ek my maar moet skik volgens ander mense se idees en verwagtinge. Dit is nie regverdig teenoor my of ander mense soos ek nie. Ek het ook drome en planne en ideale en verwagtinge oor my toekoms. My hart raak baie seer as ek hieroor praat. Omdat dit iets is wat so moeilik is om oor te skryf, het ek dit nog nie voorheen aangeroer nie. Dit is nou tyd dat ek daaroor praat.
Om gestremd te wees beteken nie ons dink nie ook aan ons toekoms, soos ander mense nie. Ons dink ook en ons moet saamlewe met wat ons hoor en sien ander mense oor ons toekoms sê. Ons is dan ook, soos ander mense, bekommerd oor wat van ons gaan word.
My brein is nie aangetas nie, ek kan dink en verstaan. Ek weet wat die “odds” is dat ek ‘n onafhanklike toekoms te wagte kan wees. Dit is nul. Tog wil ek ook, soos ander mense, oor my toekoms droom en alles in my vermoe doen om ook my drome na te jaag. Ek wil toegelaat word om my drome na te jaag.
Al klink dit dalk vir ander mense belaglik, ek het ook drome en ideale en verdien ook ‘n geleentheid om dit waar te laat kom. Dit is nie reg dat ander my net een kyk gee en besluit ek kan iets nie doen nie. Ons moet baklei teen ons eie gestremdheid en dan nog die gestremde boksie waarin die wereld ons wil druk. Dit is ‘n dubbele stryd.
Ek is bitter bevoorreg, want my ouers gee my die geleentheid om my droom om skool te gaan, na te jaag. Al is dit nie iets wat ander mense verstaan nie, dit is my droom en my ouers gee my die kans om dit na te jaag, ten spyte van ander se vrae en ongeloof. Hulle help my om my droom te verwesenlik, hulle gee my ruimte om my eie besluite te neem, hulle help my om my drome na te jaag. Dit maak ‘n reuse verskil in my lewe.
Om my eie besluite te kan neem, en my toe te laat om my eie sê te sê, is die grootste vorm van eer en respek wat ek nog ooit ontvang het in my lewe. Niemand het ‘n idee hoeveel dit vir my beteken nie.
My mamma praat nie meer namens my nie, sy gee haar stem vir my sodat ekself kan praat. Dit is die mooiste ding wat iemand vir my kan doen.
Dit gee my die moed om op te staan vir ander soos ek wat nie so bevoorreg is nie.
My acceptance of myself was an important step on my path to Freedom from my prison of anxiety and fear.
I had to fight a lot with this.
My life is not easy. I will always have to fight a battle to be heard and accepted. None of that has changed. I’m also far from giving up the fight to let my voice, and others like me ‘s voices, be heard,
but my heart is calm about my past and my way forward.
My acceptance of myself would not have been possible without:
1. Faith
I had to believe, even if I didn’t see, or even hoped anymore for, in a good life being possible with my body and my life as it was and is. I see now I didn’t believe in it for nothing, God provided. With all my flaws and all, God loves me. He considers me worthy enough to do His work, to carry out His message, even if I am without voice. How can this not make someone feel good enough?
2. Communication
Communication has completely changed my life. Without it, my life was really very bad.
It’s about so much more than being able to say I’m hungry/thirsty. Without communication, I couldn’t go to school either and no one knew or understood me. I was bitterly lonely even though I was in a school. Now that I can communicate, my life is so different.
Because I can communicate, my loneliness is no longer my only friend.
My words allow me to introduce myself to others and make me known to people. Because people now get to know me for my brain and my heart, there are actually people who like me.
A very important joy that communication has brought me is that I can “talk” about my feelings. It’s as if a door opens when I can tell my mommy what’s bothering me and why my body reacts the way he does. My heart calms down almost immediately when we talk about things, because without communication it’s like we’re both like a balloon being blown up until we explode at some point. This part of communication is probably one of the biggest contributions to my Freedom from anxiety and fear.
3. Knowledge about why my body works the way it works
Since starting S2C (Spelling to Communicate), we’ve learned so much. Besides being able to communicate, the most important thing we’ve learned is why my body works the way it works, and why my body doesn’t want to work the way I want him to work.
My body is not obviously disabled. I have all my body parts. All my body parts can do what they are supposed to be able to do. But the pathways from my brain to my body’s parts, (which I have to use to get the parts, I have, to move or perform movements with), are disabled. That’s why I can’t speak, even though I have all the parts one needs to be able to form speech with. My brain doesn’t get my speech producing parts moving to form speech. To form speech, there are many parts that need to move together.
This disability is not only limited to my speech, but also all over my body. That’s why I can’t perform movements that I want to or plan to perform. On top of it all, the messages to my body parts gets mixed up as well.
So,
I hear what people are saying,
I understand what someone is saying,
I know how I want to react,
I want to respond,
but I don’t get my body to do what I want it to do.
It therefore happens that I would e.g. walk while I would rather sit down, or the other way around.
To get my body to perform the movements I want him to do, I have to deliberately and purposefully train my brain and my body to work together to get my body and my brain to engrave that combination of brain pathways and movements so that it eventually automatically falls into place when I want to use it. This is easier said than done. Practicing a simple movement like this sometimes can take months or even years. It’s super frustrating.
My emotions can also throw a spanner in the works with this process – good or bad emotions can equally hamper my work on my body.
My body can also form bad paths and get stuck in patterns. That’s why I’m so struggling to stop doing certain bad habits, e.g., picking my nose. Most of these habits are too bad or shameful to even mention here and are something I’m very ashamed of and really don’t want to do. Unfortunately, those paths have been engraved in my brain already and it is very difficult to get them erased again. It always amazes me how easily bad paths form and how much effort I must make to form good paths. However, I also understand that it’s about different parts of my brain that I use.
I’m not going to explain further about this right now, because what I actually want to say is: I UNDERSTAND WHY MY BODY DOES WHAT IT DOES AND WHY IT DOESN’T DO WHAT I WANT IT TO DO. Understanding this, enables me to accept my inabilities, make peace with my disability, and learn to live with it. Before I knew why my body is so difficult to control, it made me very depressed and anxious. Now that I understand why my body doesn’t work like other people’s, I’m much calmer about it and when I’m calm, I can actually get more done with my body.
Aanvaarding, my sleutel tot Vryheid. (DEEL 2 van 4)
My aanvaarding van myself was ‘n belangrike stap op my pad na Vryheid vanuit my tronk van angs en vrees.
Ek moes baie baklei hiermee. My lewe is nie maklik nie. Ek sal altyd ‘n stryd moet stry om gehoor en aanvaar te word. Niks daarvan het verander nie. Ek is ook nog lank nie klaar gestry om myself, en ander soos ek, se stemme te laat hoor nie, maar my hart is rustig oor my verlede en my pad vorentoe.
My aanvaarding van myself sou nie moontlik gewees het sonder:
1.Geloof
Ek moes glo, selfs al het ek nie gesien nie, of selfs meer gehoop nie, op ‘n goeie lewe met my lyf en my lewe soos dit was en is. Ek sien nou ek het nie verniet geglo nie, God het voorsien. Met al my gebreke en al, het God my lief. Hy ag my waardig genoeg om Sy werk te doen, Sy boodskap uit te dra, selfs al is ek sonder stem. Hoe kan dit iemand nie goed genoeg laat voel nie?
2.Kommunikasie
Kommunikasie het my lewe totaal verander. Sonder dit was my lewe regtig baie sleg.
Dit gaan oor soveel meer as om te kan sê ek is honger/dors. Sonder kommunikasie kon ek ook nie skool gaan nie en het niemand my geken of verstaan nie. Ek was bitter eensaam al was ek kastig in ‘n skool. Noudat ek kan kommunikeer, is my lewe so anders. Omdat ek kan kommunikeer, is my eensaamheid nie meer my enigste vriend nie. My woorde maak dat ek my aan mense kan bekend stel. Oor hulle my leer ken vir my brein en my hart, is daar “actually” mense wat van my hou.
‘n Baie belangrike vreugde wat kommunikasie vir my gebring het, is dat ek kan “praat” oor my gevoelens. Dit is asof ‘n deur oopmaak wanneer ek vir my mamma kan vertel wat my pla en hoekom my lyf reageer soos hy doen. My hart raak amper dadelik rustig wanneer ons gesels oor goed, want sonder kommunikasie is dit asof ons al twee is soos ‘n ballon wat opgeblaas word totdat ons een of ander tyd ontplof. Hierdie deel van kommunikasie is seker een van die heel grootste bydraes tot my Vryheid van angs en vrees.
3.Kennis oor hoekom my lyf werk soos hy werk
Sedert ons met S2C begin het, het ons so baie goed geleer. Behalwe vir om my in staat te stel om te kan kommunikeer, is die belangrikste ding wat ons geleer het, hoekom my lyf werk soos hy werk en hoekom my lyf nie wil werk soos ek wil hê hy moet werk nie.
My lyf is nie ooglopend gestremd nie. Ek het al my parte. Al my parte kan doen wat hulle moet kan doen. Maar die paadjies van my brein na my lyf se dele, wat ek moet gebruik om die parte wat ek het te kry om te beweeg of bewegings mee uit te voer, is gestremd. Dit is waarom ek nie kan praat nie, al het ek al die parte wat mens nodig het om mee spraak te kan vorm. My brein kry nie my spraakparte beweeg om spraak te vorm nie. Om spraak te vorm, is daar baie parte wat moet saambeweeg .
Hierdie gestremdheid is nie net tot my spraak beperk nie, dit is oor my hele lyf. Dit is waarom ek nie bewegings kan uitvoer wat ek beplan om uit te voer nie. Die boodskappe na my parte raak nog deurmekaar ook.
So,
ek hoor wat mense sê,
ek verstaan wat iemand sê,
ek weet hoe ek wil reageer,
ek wil reageer,
maar ek kry nie my lyf om te doen wat ek wil hê dit moet doen nie.
Dit gebeur daarom dat ek bv sal loop terwyl ek eerder wou sit, of anders om.
Om my lyf te kry om bewegings uit te voer wat ek wil hê hy moet doen, moet ek my brein en my lyf doelbewus oefen om saam te werk om my lyf en my brein te kry om daai kombinasie van breinpaadjies en bewegings vas te kap sodat dit uiteindelik outomaties in plek val wanneer ek dit wil gebruik. Dit is makliker gesê as gedaan. Om ‘n eenvoudige beweging so in te oefen vat soms maande of selfs jare. Dit is super frustrerend.
My emosies kan ook ‘n spanner in die “works” gooi met hierdie proses – goeie of slegte emosies kan ewe veel my werk aan my lyf belemmer.
My lyf kan ook slegte paadjies vorm en vashaak in patrone. Dit is hoekom ek so sukkel om sekere slegte gewoontes, bv om in my neus te grawe, op te hou doen. Meeste van hierdie gewoontes is te sleg of skandelik om hier te noem, en is iets waaroor ek baie skaam is en regtig nie wil doen nie. Daardie paadjies is ongelukkig al vas gekap en dit is bitter moeilik om dit weer uit gevee te kry. Dit verbaas my altyd hoe maklik slegte paadjies vorm en hoeveel moeite ek moet maak om goeie paadjies te vorm. Ek verstaan egter ook dat dit gaan oor verskillende dele van my brein wat ek gebruik.
Ek gaan nie nou verder hieroor verduidelik nie, want wat ek eintlik wil sê is: EK VERSTAAN HOEKOM MY LYF MAAK SOOS HY MAAK EN HOEKOM HY NIE WIL MAAK SOOS EK WIL Hê HY MOET MAAK NIE. Dit maak dat ek my eie onvermoens kan aanvaar, vrede maak met my gestremdheid en leer om daarmee saam te leef. Toe ek nie geweet het hoekom my lyf so aweregs is nie, het dit my baie depressief en angstig gemaak. Noudat ek verstaan hoekom my lyf nie werk soos ander mense s’n nie, is ek baie rustiger daaroor en as ek kalm is, kan ek sowaar meer uitgerig kry met my lyf.
my silent voice/ my stil stem 